A Mothers Day Tribute

I wrote some thoughts about the parents of kids with autism several years ago (The Real Mama Grizzlies), and now hope to add just a little to that particular discussion.

Some time back, I attended a conference focused on recent research in the field of autism.  With our awakening to the very real challenges of kids on the spectrum becoming adults, one of the more relevant and interesting topics that day was quality of life for adults with more severe autism, specifically those who have little or no spoken language and require ongoing care throughout their lives.  The young person (doctoral student maybe) giving the presentation struck a nerve with me when describing an unexpected observation coming from their research.  Essentially what they found was that quality of life was generally perceived to be better if the person on the ASD spectrum had a mother who was actively involved in their life.  I am taking great liberties here in my paraphrasing of what was said, and since this was not originally part of the research design, but rather an aside that became more and more obvious to the researchers over time as they collected their data, I am not sure if it even made it to the written summary of the study.

A dad in the audience challenged the statement that it was the mother who needed to be involved, but this was explained as a simple reflection of the reality that almost without exception it was a mother who was responding to what was being asked in the questionnaire.  It wasn't that dads were unimportant or uninvolved; it was just that the researchers were dealing with mothers almost exclusively in this particular study.  Meanwhile, I experienced a chill throughout my entire body as I looked around and realized that I might well be the only one in the audience old enough to have actually experienced the stigma of the "refrigerator mother."  While not a mother of an autistic child myself, as a young teacher I certainly DID hear the theories and know that mothers around the world were living with the knowledge that many, many professionals did, in fact, hold them responsible for the challenging behaviors their children were presenting.  Other than that one father and myself, no on else seemed the least bit troubled.  And the discussion continued.

I gave some serious thought afterward to pulling what I call the "Grandma card" --- I could contact someone at the center and suggest they educate their young researchers about the early history of autism.  I certainly should save them all from further embarrassment going forward. Grandma's wisdom, you know.  But a little time went by and in the end, I did nothing. 

Well, not exactly nothing.  I did a whole lot of thinking and reflecting, and gradually came to the realization that they might be onto something.  My second career, post-retirement from teaching, has involved working closely with many families who have non-speaking adult children who require care and support 24/7.  They come to see me because their families recognize that these individuals, while unable to speak, may actually have a lot to say - and for most of them, typing is highly effective.

Day after day, I interact with mothers who believe in their grown children.  These moms continue to be highly involved in their kids' lives.  Many have made the choice to put their own lives on hold and devote whatever time, energy and resources might be available to them to providing the support their child  needs to have the highest possible quality of life.  They actively advocate for their child, they continue to seek out appropriate programming and community involvement.  They schedule therapies and medical visits.  They modify diets and menus, provide nutritional supplements, buy organic and cook from scratch, do their own research into what might be most beneficial to good health.  They travel to conferences and stay up late at night to check for the latest Internet updates on what is new in the field.  Some even uproot their whole family and move in order to access better support services.

Yes, of course, dads are involved also.  But I  see mostly the moms, and the ones I see are amazing.  To carry this one step further, you might want to search for such terms as "awesomism" or "awetizm" to get a relatively new and exciting view of autism and all its special gifts.  These parents REALLY believe in their kids!

I don't want any of us to forget the damage done by the image of the refrigerator mother, but I think we can all agree it is better to see the gifts that mothers, fathers and their children bring to our world.  Let's focus on that, and let's agree that a child whose parent believes in them and never ceases to do all that they can to provide love and support is almost certain to have a higher quality of life as an adult than one who is unappreciated or underestimated.

Guest Blog: More from Nick

 

Dear friends, meet Nick.  Here is his mother's introduction:
 "My son Nick is a thirty year- old Aut artist. We reside in southern Wisconsin, USA. Five years ago Nick was able to communicate with us using FC and is now also using RPM, changing all of our lives forever for the better. He is a synesthete and a compassionate being; he wants others to see him as a whole person and see the gifts of autism, not a disability. He does this through his writings and his art and we have successfully combined both in the form of posters with his quotes on them. My favorite is, "Being able to type is almost like being re-born."
Nick has been drawing since childhood and began painting in earnest over the last few years. His work has run the gamut from caricatures to portraits, city and landscapes to his current favorite- abstracts. The spheres and squares are deeply spiritual works for him, representing the expanding potential of new realms."

By way of explanation, we meet on a weekly basis for about 45 minutes each session.  I provide the physical support he needs to get his thoughts out using Facilitated Communication (my "tiny finger" as he describes it) and Laura and I ask questions for clarification as he types. He orally reads everything he types and can speak enough to give us a hearty YES when he likes what we say or ask. This is a transcript from a recent session:

Hi nick, November 6, 2017  (this part is always typed independently)

Nick: Very big news.

Char: Good news?

N: Very knowing people just love my people to be your people.

Laura: Is somebody joining up with somebody?

N: Believe in my intelligence and your love will very much show. Very much I need your time and your times.

C: Help us understand that.

N: Very much you help me get my thoughts out.

C: Tell us some more.

N: Believe in my intelligence and we can change the world.

L: What will a changed world look like?

N: very many new people are starting to see that people like me are here for the whole world.

C: True. More people are starting to see, but what does that mean?

N: (Laughs wickedly!) very soon I might be moving into the new dimension.

L: How is that going to be different? Will you be different?

N: By now you know that {Name/another FC user} is moving there too.

C: I just wish I knew how to help him. He’s been saying that for awhile.

L: Help us understand how to help you- both of you.

N: Very much I very much love this great dimension.

C: How does this work? You have to explain since you’re the teacher here.

N: Because people are in the third dimension we can not help them.

C: You and {Name} cannot help them?

Nick runs for the bathroom, returns and picks up right where he left off.

L: So you are moving from 3 to 5D?

N: Best is your help to move how I have moved.

L: How have you moved? You are the main example to us.

N: Beautiful outer beings helped me.

L: Please say more about ‘outer beings.’

N: gear up for about hearing that new earth is here.

L: How does that work? Do you help us to rise up so we can help others up to the new earth or new House, as you’ve been saying?

N: Best is if we free ourselves from all fear.

L: To be free of fear is to become full of trust?

N: very true mom.

C: We are all better off if we can see things more positively.  Is there more we need to do to keep going forward?

N: (“Yeah!”) Be very loving.

C: What do we do about bad news?

N: Bad news is just a new way to cause more fear.

L: I felt/heard every word of that before you typed it!

C: Me too. Can we share this?

N: (“Yeah!”)  very many people can be changed if you trust my words.

C: You have built a world following; they will be glad to hear your words. Is there more I can do? Do you want to do a guest blog again?

N: (“Yes!”)

L: He’s been waiting for you to volunteer!

C: You have more to say that you want out there?

N: Be very much in the dimension of love.

C: Help us understand this better in order to be clearer, share better.

N: because I am in the new dimension the world is already very loving.

L: If we give up our fear and can trust, we can go to the new dimension too?

N: (“Yes.”)Now our life is in the old dimensions but soon you will be part of the fifth dimension.

C: So we skip the 4^th. Does that mean that we have to leave some people behind?

N: Because not every body is ready not everyone will move.

L: Those who are fearful or the ones causing it, they are staying?

N: Now understand that all fear is helping people to say that new thinking is dangerous.

L: The ‘new thinking’ would be more loving without fear?

N: (“Yes! Yes! Yes!!”)

C: Who helped you?

N: Very many outer people help us so we can help you.

C: Are other people ready to hear? And who are these others? This is very profound and helpful information. I do think more people are in tune or ready today than ever before.

L: This fits with the notion that a very bad leader will force the rest of us to join together. Tune in or get in tune- to intuit truth. There’s some fun word play happening here.

N: Believe in gearing up because understanding is moving very fast.

C: So you feel optimistic? I’m glad you sound hopeful now when you’d been so worried before.

N: Can I just not ever stop typing with you.

C: I want to keep doing FC with you as long as my tiny finger holds out.

L: Do you want to tell  any more since the clock is ticking down- about a dream or your art or anything else?

N: Mom had a dream that I could get my thoughts out by talking.

C: Do you dream you can talk?

N:  Be sure that I can talk in my dreaming.

L: My dream was actually about the complexity of the Universe with colors and shifting lines and tones and energy. I wonder if you could paint that on that giant canvas.

N: Best for me to paint my own visions.

C: The world needs your visions and those of people like Jeremy who paints auras, and souls and  Alma, the amazing 12 year-old musician in the news last night.

L: We can start to bring out more wonder and banish fear.

N: Best to share those stories.

The end.

Earlier posts from/about Nick:

The Answer is Love

Attitudes Famously Hurt